Diagnosed with Benign Fasiculations

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bfhopeful2

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All of you were right. I freaked for no reason. Let me start by saying that he says I do not have ALS. His official diagnosis was benign fasiculations. I do have some facts that I want to share as I think they are relevant. I hae read a lot of things on the internet that made me scared, but I got everything cleared up today. The guy I saw is the head neuro of a research institute so I think he knows his stuff.1) Benign fasiculations can and most often are caused by stress and anxiety.2) By the time you have fasiculations you will already have weakness, maybe you don't see it but the doctor will pick up on it for sure. 3) You can not have an emg too early to detect ALS.4) Fasiculations only start after the muscle starts to deteriorate. Therefore weakness and atrophy to some degree will be present.5) Fasiculations alone do not mean ALS.I know we have all heard that before, but I was tired of reading conflicting reports on the internet. He also said that stress and anxiety will make them worse. This of course we all know to be true. He made a good point that I already intellectually accepted that I don't have ALS, not I just have to accept it emotionally. There is nothing more I can do. I don't have it. So the only thing I can do is take some of Ed's *beep*.Thank you to everyone that listened to me freak. It is much appreciated.
 
Hate to say I told you so but...TOLD YOU SO!! Let me guess? No follow up EMG either! Ha! (just kidding)Joking aside, that's great news. I hope this gives you some real peace of mind. As a wise man on here once told me, print a copy of what you just wrote about what your neuro said and hold on to it, and refer back to it every time you start to worry.I like what he said about accepting you don't have it emotionally, that is so true. Its like intellectually you get to a point where you know it can't be, but emotionally you can't accept the truth. Its also nice to hear once again that the EMG can't be done too soon after fasciculations have started. That's always worried me when I have read some saying they have to get a second emg in 6 months to "be sure" and my neuro never indicated a follow up emg in a few months.Anyway, take the doc's words to heart and drop your worries about this. Accept that you're a twitchy freak of nature like the rest of us and relax and enjoy life. And stay away from Ed's magic herbs. It may make you happy but it won't help the twitches!
 
I love this post. Thank you so much for sharing your doctor's knowledge with us. The issues you address are pretty common worries around here. Especially the "did I get my EMG too early" thing. I know I am experiencing that one right now. It is coupled with "did I get the right muscles tested." Yes, I am doing that old worry dance again. :LOL: Thanks again!Becky
 
That's rally great news - I'm really delighted for you that all is well.I doubt you will have any more anxiety from here on in but , if you do, I think the person who said 'print this email and look at it when you're worried' is very wise.... my post after my last neuro visit was full of relief but I somehow managed to have an anxiety relapse since and wish I had done just as was suggested!Be well.RegardsSimon
 
I think that the anxiety creaping back in here and there is normal. No way you can hold a fear so strong and for so long without having it resurface. I can tell you that I saw a lot of sick people in the dr's today and if any of us looked like them we would not even be considering BFS as a diagnosis. We would have never found this board. One thing I forgot, checking your tounge while it is sticking out is a waste of time. Amy has said it before and my neuro confirmed, the only thing he cares about is when it is resting in your mouth. Not that if it isn't it means the worst, just every tonge moves when it is sticking out. I know JRO said that before as well.One thing that may make you guys laugh a little. When I was talking his strength tests he asked me to squeeze two of his fingers and I did so with so much force that you could tell he was in pain. I didn't mean to, I just got a little overzealous.
 
That's great news. I hope you can put it behind you and move on. I suspect things will improve in one way or another as the anxiety goes away. I hope you hang around here though to keep us newbies on the right track.
 
I guess the times I went I was so worried about myself I didn't even notice. This time I had a slightly better grip and was looking around while waiting. Obvious to say the least that if anyone saw me they would say I was 100% normal. Only I see the weird things that I do. And I have to bet that my anxiety is making me do them. No one else notices me, these people you could point out in Time Square.
 
You've found part of the cure - get outside of yourself a bit more. I met a friend at Starbucks today and we were joined by a guy with muscular dystrophy in a motorized chair - when he left we reflected on how easy our lives are compared to his; how much strength of character it takes to do basic things we take for granted. Since I worked with MD people for a few years I often reflect on their courage. I try to remember this when I'm fighting the cramping spasming blues (self SLAP! Reality check pleez). So much of it is just our perspective.....
 
IM OK, that's a great point and something I've found that's been helpful. Just not being so self absorbed and in tune with every symptom and focusing more on others is very helpful in turning my mind away from the wasteful stress and anxiety. I've tried to focus on helping others and getting outside my own situation. Looking back I feel ashamed at how self-centered and self absorbed I was at times when the twitching first started.When I spend time focused on my kids (listening to them more), friends, family, I've found I think much less about the other stuff.
 

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